My Dearest Kaidence,
Today is December 23rd, only 2 days before Christmas and we are celebrating your "First Angel Heart Birthday." Last year at this time you were in surgery and we were awaiting the arrival of your new heart. The moment they came and told me your new heart was in a beating will be a moment that I never forget. This gift was given to you by an amazing family who's little boy returned back to Heavenly Father. They wanted you to live and be happy and because of them you will.
Kaidence, you truly are a daughter of God. You have been blessed with many beautiful attributes that were given to you by your Heavenly Father so that you would be prepared for the trials that you would face in this lifetime. One thing that the nurses and doctors that cared for you for so long said about you, was that you were full of patience and grace. I am amazed by these qualities every time I think back to those days. It was like you knew that this was part of your mission in life and that you accepted everything about it, including the pain.
You are a fighter Kaidence, You never gave up. You are our "Fairy of Faith." We know that "Medically speaking", you should not be here. But we know that "Spiritually Speaking" Heavenly Father has his own plans for you. You have a big purpose. You have already taught so many about life. You have given so many HOPE.
Faith, fasting and prayer were some of the things that we could not have done without. I have spent many nights on my knees in a hospital bathroom pleading in prayer.
You have had many amazing blessing given to you by your daddy and others and I am starting to see those unfold before my eyes. You do have an "infectious love" and so many "have been drawn to you." You are also a "medical miracle" and are"living a happy, joyful and fulfilled life at home with your parents and your brothers." So many people love you, many of whom you don't even know yet. Kaidence, I want you to know that while you were sick so many reached out to your family and we have been blessed by hundreds of acts of kindness and service.
Kaidence, I am sorry for all the times that I have had to hold you down while doctors and nurses did what they needed to do. I know that you probably wondered why your mommy would let others hurt you like that. It would break my heart when you would just cry and look at me or when you would reach our you IV filled hands and want mommy to pick you up, but I couldn't. You were too sick . I knew that it took all your energy to lift your little arms to me, because you were so weak you would no longer fight or cry when they would come to draw blood and place IV's. You no longer had a voice for yourself but please know that your daddy and I have tried and will continue to be your voice.
Kaidence, you have two AMAZING big brothers who love you very much. They have made sacrifices but never complained because they love you. They have learned more about faith and prayer than most their age and they too recognize that Heavenly Father has heared their prayers for you. Because of what they have seen you go through and watching others at he hospital they have been blessed with the gift of compassion, prayer and understanding for others. They understood that mommy had to spend so much time with you because they didn't want you to be alone at the hospital. They have been so good to you.
Kaidence, you have carried a great spirit about you since your birth and now I know why. I would never trade all the sleepless night, sick tummies, the tears, worry, walking the hospital halls in my pj's, and my crash course in nursing for anything, because I get to love and care for you in this lifetime.
I love you my baby girl. Always embrace life and who you are. You are my miracle!
I Love you,
****UPDATE- I think we are going home today!!!!
Here is the link to her article from Sunday http://www.standard.net/live/news/159399
Tuesday, December 23, 2008
My Dearest Kaidence,
Posted by Kaidence's Mommy at 8:32 AM
Monday, December 22, 2008
I have had about two hours of sleep and my eyelids are so heavy, but I wanted to quickly update about this morning. So, I of course woke up feeling.....exhausted, frustrated, stressed and VERY emotional. I knew that this day was coming and I still have many emotions to deal with regarding Kaidence's transplant. I know that sounds very weird and I thought that I had dealt with all my feelings, but apparently not. Today was the day a year ago that we got "the call" telling us that our prayers have been answered and that Kaidence was getting a new heart. Everything happened so quickly from that point on and I have been so busy caring for her since that I haven't really been able to work through some feelings. These are good feelings of gratitude but also the ongoing heartbreak that I think I may always carry in my heart for our donor family. I am still just so amazed that someone would give us such an amazing gift. I have worried about our donor family so much lately. So needless to say I have some emotional stuff going on. I couldn't even walk to the cafeteria today without crying because every time I walked by, kind people were dropping off gifts for the children at the hospital for Christmas. We truly live in a very unique and kind community. Not all children's hospitals have this type of support.
Anyhow, as the day went on, things with Kaidence got better. She is still very tired but is getting better all the time. Every blood, stool, snot and urine sample sent out has come back negative, so that is good, but her CRP increased today to 22 (not good). Her echo looked fine. The medical team consulted with cardiology and let them know that the "illness" that Kaidence has, has been going around and that they have also seen elevated CRP's in others kids with the same symptoms. So the plan is that if no fevers occur during the night, we can go H _ _ _ tomorrow. What a great way to celebrate Kaidence's "Angel Heart" birthday tomorrow. To think, last year we were holding Kaidencce for the last time before she went off to surgery and now here we are a year later looking forward to spending Christmas together as a family. Thanks for your prayers, they are working!
Posted by Kaidence's Mommy at 8:13 PM
Well, it is just about midnight and we are still sitting in the ER. Mike has gone home because he has work tomorrow and no longer has any time off (it has all been used on Kaidence and his arm surgery). I haven't slept really in over 24 hours and am starting to feel it. Maybe my patience is starting to struggle a little. Kaidence's fever has finally broke and she has gotten some IV fluids. (gotta go. I'll update in a minute).
Ok, it is now 2 AM and I am officially very grumpy. Kaidence's CRP (the bodies inflammatory response) is very high. It should be below .8 but it is 18. So we know that something is going on somewhere but we don't know were. We finally got a room for Kaidence (I arrived at the hospital at 5:30 tonight). As we started getting situated in her room they told me that we had to move to the PICU because they could not do high flow oxygen on the floor. Hello, you can send an average mom home with a kid on high flow oxygen for night times sleeping but the trained nurses along with the respiratory therapist next door can't handle it???? Hospital protocol. So then after much conversation and getting our PICU room ready they decided to keep us on the floor. Well now they just came and said that they didn't know that Kaidence is on precautions because they did a respiratory panel. We have to wait for the "official" respiratory panel to be done, but all preliminary results are negative. So now we have to move to a dirty pod and chance Kaidence picking up who knows what but they have to call in a nurse and so we can't move until she gets here. Each person that walks into the room ask the same questions and does the same exam. Kaidence has had her ears examined about 5 times today (usually always being woken up to do so). I know it is always like this. We have done this enough to know better but you would think that when child hasn't slept since Saturday afternoon, they would let her do so. Our plan is to do more labs in the morning and check her heart. Battery dad, gotta go.
So It is 5 Am and I am Super Duper Grumpy and tired. We are finally moved, Kaidence is asleep and I am heading to bed. I will be up in an hour when they round at 6 AM. I need some sleep!!!!
Posted by Kaidence's Mommy at 6:00 AM
Sunday, December 21, 2008
We are off to our "house on the hill"....Please say a prayer for little Kaidence!!!
Posted by Kaidence's Mommy at 4:51 PM
I was really hoping to go to church today as a family and let Kaidence wear her beautiful Christmas dress but.......Kaidence is pretty sick. She has had a fever of 103.8 (much to high for an immunosuppressed kiddo) and is coughing, vomiting and not eating anything. She has cried all night and all day today. Even with Tylenol (we can't have Ibuprofen) she continues to have a fever. I can't give her all of her meds so we have to pick and choose the most important. We need your prayers please. If her fever continues and we don't have a answers as to why, we have been told by cardiology that we will have to take Kaidence up to PCMC ER. I don't want to go because I know we will be admitted for "cultures: and other tests and I don't want to chance another Christmas up at the hospital. The boys don't want it either. I hope that this is nothing too serious. Our WONDERFUL pediatrician is stopping by to take a look at her today and hopefully we can find something that can be treated with antibiotics at home. Please keep little Kaidence in your prayers.
-Also, Kaidence's story is on the front page of the "Standard Examiner" today and not last Tuesday for those that were wondering what happened.
Posted by Kaidence's Mommy at 1:43 PM